How can citizens contribute to health learning?
Suddenly my farther had chest pains. The emergency has arrived, and ECG was taken. I was of course eager to learn the results immediately. “You need to study six years to understand it”, snapped the doctor. “Your GP will inform you in due time”.
I was appalled. After all I had a university degree and many years working in the Health IT area. Am I really uncapable to understand the ECG readings? The next step was to go online to study ECG interpretations. For sure by now my knowledge is not up to the level of professional cardiologists, but at least I am able to see if something is wrong with ECG waveforms.
Patients health illiteracy stems from their fears and pains, and consequently: the desire to delegate the problem to somebody who allegedly can solve it immediately, be it a doctor or God. Medical professionals tend to exploit these feelings to reinforce their medical authority. Thus, a study on the observed behaviors of specialty physicians showed that “less than one doctor out of every four ever gave the patient an opportunity to participate in any type of decision making at the surgery”.
One of the typical statement: “while patients have expertise in their own experience of symptoms, they typically have minimal knowledge about their diagnostic journey to an unknown destination. The patient does not necessarily know what information is valuable for diagnosis, or when to be concerned that diagnosis is off track”.
With all respect to a six years’ diligent medical learning curve, I started believing that there are certain advantages that people coming from other industries can contribute to enhance health knowledge and care.
Approaching health: from general to specifics
Medical professionals undergo long years of studying which requires a lot of efforts and memory strains. One has to cover general subjects such as anatomy, physiology, biochemistry, microbiology and then dive into specializations. The methodology of learning and thinking is based on the vivisection of human body which is reflected in the contemporary structure of medicine being split between various fields such as gastroenterology, cardiology, nephrology, gynecology, oncology with various localizations, etc. The logic of this structure presupposes that if all organs are functioning properly a person should be healthy, which, unfortunately, is not the case. In complex systems the total is not equal to the sum of its parts.
Patients with professional engineering or scientific background are in the first instance applying a holistic approach to multifaceted subjects and after that are going into specifics.
For example, a physicist dealing with complex objects will first study an entire system, specifying its behaviour by overall macroscopic characteristics that are determined by some average system properties such as, e.g., temperature. One cannot describe, for example, the Universe by studying separately “dark matter” or comprising atoms. Likewise, one cannot understand the Earth climate by investigating the behaviour of separate molecules in the atmosphere.
An engineer, while checking the state of a nuclear power station, will not be satisfied if a steam generator or pressure vessels alone work properly. The latter being subordinated to the principal goal that is generating electric power ensuring the overall safety of a nuclear reactor.
Likewise, a patient, e.g., with scientific or engineering training while studding the nature of diabetes may challenge doctors with basic and seemingly naïve questions: what is the glucose metabolism in the body? What set of organs is entangled and what are the main functions of those organs? What chemical substances making up the interaction between such organs, in particular hormones, are involved?
This deductive reasoning that moves from the general rule to the specifics may not be sufficient enough to provide all the correct answers, e.g. in complicated cases, but can certainly help posing meaningful questions. A big leap forward.
Medical professionals, however, are often taking quite the opposite – inductive – approach trying to derive the general and indivisible state of human health from the behavior of particular objects (the body organs). At least that is how it is seen from a patient’s’ perspective. While talking to e.g. diabetics’ patients many physicians tend to enumerate to a patient the abundance of affective factors such as bad nutrition habits, wrong life style, previous diseases or semi-mystical genetic influence. However, it is not obvious from such discussions which factors are relevant for a specific metabolic function of a given person.
In essence educated patients tend to look at the human organism as a system, while medical professionals are often concentrating on its separate parts.
Patients’ intellectual “dive down” approach in understanding their diseases proves to be fruitful.
The study conducted among patients with Diabetes type 1 (DM-1) who went through education course and reported of positive changes in their condition showed that the “participants emerged from the course with greater condition-specific knowledge than many of the healthcare professionals they encountered.”
However, “patients who have in-depth knowledge of their condition encounter problems when their expertise seen as inappropriate in standard healthcare interactions, and expertise taught to patients in one branch of medicine can be considered non-compliant by those who are not specialists in that field”.
The statement provokes two observations. First, some doctors are still considering an educated patient as an unnecessary challenge and a threat to her/his dominant position in healthcare. Second, many physicians are “locked” within the domain of their specific professional expertise, having difficulties in reacting to information flowing from external knowledge domains.
Despite more than three centuries of the development of modern physics, mathematics and based on them successful engineering disciplines, medicine has not yet come to grips with the worldview and methodology adopted in natural sciences. Note, however, that most achievements of modern medicine are based on the techniques imported from experimental physics and applied mathematics (e.g., magnetic resonance imaging (MRI), computer tomography (CT), acoustic methods such as ultrasonic investigations of inner organs and blood flow, dynamic mapping of vessels, brain, muscles, glands, etc. showing metabolism and oxygenation in corresponding tissues, optical and laser methods, e.g., analysis of spectra of scattered light and so on. Naturally some technically savvy patients can be of help in dealing with certain complex explorations.
Education journey in Health is still a bumpy road. It requires support both from communities and governments. Medical professionals have to cope in future with new interdisciplinary natural science subjects to develop new methods of integrated health state analysis. Citizens, on the other hand, are to increase their knowledge of human anatomy and physiology.
Systematic health education in understanding the functioning of the human organism, physiology and biochemistry should start early at school. This will increase the level of health literacy among citizens, while allowing medical students to concentrate in their years of studying on new trends in medical science as well as cross-border sciences such as bioengineering, biophysics or genomics (including computer genomics).
Health literacy should be part of the standard European culture. Let us not talk just about “educated patients”. Let’s struggle to build an educated, cultural and healthy society.